I was adamant this time. I simply refused to listen to the Number One Specialist then. But God bless his soul. He was the epitome of the word “patience” itself. Far from admonishing me for my outright stubbornness, he admitted that perhaps he was not the best person to advice me, and suggested that I spoke to his colleague. So, immediately I was referred to Dr. Zaki.
Dr. Zaki was as kind and as soft spoken as Doktor Sulaiman (now Datuk?/Tan Sri?). Yet somehow, it was the way he presented the dire consequences of continuing the pregnancy that seemed to make sense to me; or at least made me agree to think and consider what he was telling me. I asked him that I was not the sole decision maker in this whole matter; there was my husband whom I had to consult. To me personally, he would be the ultimate decision maker in all this sorry state of affairs. Dr. Zaki agreed that I should talk things over with my husband, and we made an appointment for the three of us to meet again for a final decision.
Returning home, I struggled with the task of delivering the bad news to my husband. How do I tell my husband that we might possibly have to terminate this pregnancy? I thought long and hard, desperate for an idea on how to relay this sad news to him. Worse still, I simply could not predict his reaction. When I got home, I approached my brother first and told him what the doctors had advised. I knew there was not much he could do to help. But I just needed to share my pain with someone. This was something too heavy for me to bear on my own. I knew my husband would be devastated as well, so I sought my brother out for comfort and strength. I could see from his looks and few words, that, he too was at a loss for words. But I still remember clearly him telling me that my health should come first.
Comforted by my brother’s words, and with whatever strength left in me, I wrote a letter to my husband. I knew I wouldn’t be able to tell him verbally. I told him briefly what the doctors had told me, and I ended my letter saying that I love my child that is growing in me, and that if he chose that I should carry on with this pregnancy, I would; and I meant what I said.
Later that night, when he had read the letter, we talked. He seemed calm enough and suggested that we sought what our faith decrees for matters such as this before we made any decision. His opinion was that whatever Islam decrees, we should stand by that, and God Willing, Allah will help. I agreed; feeling a sense of deep comfort that Allah would know best. Before the scheduled appointment with the doctors, my husband met up with the Muslim scholar and health practitioner Prof Harun Din to ask his expert opinion on what Islam had to say for a case such as ours.
Meanwhile, my baby was growing in me – and one day I felt a strange pulling and tugging inside me. I was worried and wondered if my state of health was affecting him. I recall clearly voicing my concern to my late grandaunt that frequently came to stay.
She said, “There is absolutely nothing wrong with your child. The baby is kicking you from inside.”
Her answer brought mixed feelings to me. All of a sudden I felt this surge of love for my baby; the feeling so overwhelming that my heart felt like bursting. I cradled my tummy; and imagined myself cradling him in the crook of my arms. I knew my baby was a boy. During the last visit to the maternity clinic, the obstetrician had run an ultrasound scan and determined his sex. I smiled to myself. This was a spunky child I had inside me, kicking away from inside his mother’s womb.
And then I sobered up as I remembered the outcome of my husband’s meeting with the Professor. He had informed us that in the Islamic faith, when there are two lives to consider, one alive and one whose life is as yet uncertain (as was my unborn child), it becomes imperative to save the life of the living.
How can I? How can I possibly give up on my baby now? True, his kicks were only just feeble twitches, but to me, I felt he was as much alive in me as I am. I am his mother – no mother would give up on her child. Personally at that point I would rather give up my life, if there is any chance at all that my son would live. My heart was being torn apart. The Professor had told my husband that if God so Wills, there would be other children once I was treated and cured. But if we insisted on my carrying the baby, and should I die, then that would be a life lost and the end of my generation. My husband was satisfied and decided that we would adopt the principles of the second Caliph of Islam, Umar al Khattab, and that was we were succumbing to God’s fate while stepping into another of His Will.
Yet, when I felt my baby moved, I knew that nobody would understand the overwhelming feeling of love that only a pregnant woman can feel. I was willing to die for my son. I am his mother, born or unborn, and all the love there is in my heart and soul was for him, no sacrifice was too great for my first born. How can I give up on my first born? How can I???
(c) norhafizah manaf
November 1984. I was back in Malaysia for over four months; as a biology graduate, as a wife to my husband. I was returning for good, but my husband had another year to complete and had gone off back to the UK. Meanwhile after a four month break of just staying at my parents’ home I finally received a letter to proceed with my Kursus Perguruan Lepasan Ijazah (post graduate teaching course) – a one year course in Maktab Perguruan Temenggong Ibrahim, in Johore Bahru.
Thus, once again I packed my bags and took the train with my constant companion, Habibah. The course we were to take were the first of its kind run for overseas graduate students; a one year course. Later I found out, that the syllabus were mostly prepared almost impromptu; the government not really knowing what to do with us graduates from overseas universities. For most of the time, it was just a trial and error teaching for us. At one time, when we were taught how to cook a simple dish, even the guys found it rather humorous. I remember one guy who cooked even better than the lecturer can theorise. And why not, he said, he was living on his own in UK for five years, you would wonder who did his cooking all that while? And another example at how ridiculously unprepared the ministry was, for our Islamic studies classes, we were assessed based on what activities we did whilst we were studying abroad. For the love of God! What has that to do with our present attendance there for the course. I was reluctant to disclose my activities in the UK, and it was no surprise that I got a big fat C for my religious studies in the first semester. Forget the fact that I wear the hijab, or that I pray five times a day, or that I could recite a few verses of the Quran by heart. Oh well...there are more important things in life than an academic grade based on how much you reveal you private activities.
Life was going slow enough until mid July '85 when my husband completed his studies and came to join me in Johore. By then I was doing my six-week teaching practical stint in Benut, Pontian. I had rented one room to share with my husband in a huge semi-detached bungalow in Pontian, whilst my other friends occupied the other rooms. Not long after, my husband got his appointment letter with the then Jabatan Telekom, and had to return to Kuala Lumpur for his probation period.
It was at this time, in between practical teaching, attending classes and going back to Klang over the weekends, that I realised I was not feeling quite my normal self. I suddenly found myself very choosy over my food and with special craving for some. I was feeling tired and sleepy most of the time. Habibah was worried that my kidney condition was getting worse and fussed over me. Yet, somehow, deep inside me, call it my motherly instinct, I knew it had nothing to do with my illness. Somehow, even before the test at the clinic, I knew I was pregnant.(this same instinct I felt with all subsequent pregnancies).
It was a really tough first trimester for me. I just could not bring in more than a few morsels of rice. All I could tolerate was plain tea and plain cream crackers. My condition grew progressively worse, until one day I had to be admitted for risk of ketonuria. I was just not eating enough, until my body had no choice but to convert the fats on my body as energy source. (see appendix). This was a medical emergency, so I was admitted and immediately glucose was administered into my system via intravenous injection (the drip).
And so, once again I was back in touch with the hospital – this time in the Sultanah Aminah Hospital in Johor Bahru. Once again I was referred to the Nephrology Department, and to a specialist. Now, being a biologist, it did cross my mind if my pregnancy would aggravate my renal condition. I was ready for any consequences. Meeting up with the specialist in the hospital was an utter disappointment, I must say. I was about 8 weeks pregnant, and I was willing to discuss options. All the questions the specialist had asked me had nothing what so ever to do with my condition. Instead, he was asking about a colleague of mine from the college – asking me if she was married, if she was soft spoken, if she was friendly, if she had a boyfriend. For the love of God ... what has my colleague in college got to do with my appointment today? Please don’t tell me I had waited for so long only to be asked these absolutely irrelevant questions.
Finally I got the break I needed and started needling him with questions of my own. I asked him directly if it was clinically okay for me to keep this pregnancy. I was in my early stage, and I was ready to discuss options if I had to. And I asked him what I should do to maintain maximum kidney functions. His answer? “Oh of course, renal problem will not affect your pregnancy, and to maintain your kidney functions I suggest you eat one damn egg every day.” I swear to God Almighty, these were his words!
The paradox of his statement which kept on reeling in my mind was that I had learnt in my final year of Biology (and learnt it with deep interest) that, when the kidneys are diseased, or impaired, protein was the first thing that should be cut down. And here the doctor was telling me to take one damn egg every single day. I was utterly confused. All I could tell myself was he was the specialist, I was just a 24 year old first time mother to be, and teacher to be...what do I know?
By the time November 1985 came, I had finished my one year course in Johor and was back in Klang with my husband and my parents awaiting my first teaching posting. My pregnancy seemed to be progressing well and I was eager to continue with my follow up to chart my progress. Since I had an uncle who was a renal specialist (borrowed from Indonesia) in Kuala Lumpur General Hospital, my father thought it would be a good idea for me to get my treatment there. After all, the GH KL Nephrology department was fast becoming one of the most advanced department in the Asean Region. Thankfully, with my uncle’s influence I was referred to the Nephrology Department without much of a hassle.
When I first met the specialist there, I handed to him all the documents and test results from the Salford Royal Hospital. Somehow or other, from hence on, he would refer to me as The Salford girl. But perhaps, that was the only “nice” moment in the appointment. Immediately when I told him I was in my fifth month of pregnancy, he was shocked; and immediately told me to terminate my pregnancy. What? Terminate my pregnancy? When I can already feel him moving inside me? And what of the specialist in Johor Bahru who told me I could keep my pregnancy. This is absurd! The hell I was going to give up my baby now! I had been open minded, open to suggestions when my baby was still early in his foetal stage. But now I was dead set to keep my baby.
(c) norhafizah manaf
Wednesday, 4th April 1984 – I was admitted to the Salford Royal Hospital for a renal biopsy. Before that, however, they had to run extensive tests on me. I was an Asian, so they wanted to know my background - geographical background. It was quite degrading actually; them asking me if I lived in a house with electricity, if I had tap water in the house, if I lived in an attap house or in a building with good sewage system. At first I found that strange ... and insulting. Of course I did! I have always had electricity and tap water in my house for as long as I could remember. But then, when I first visited my in-laws, ironically that was the first question one of his aunts asked me ... if I had electricity and tap water in my house ... but for another reason. They had then only just got electricity supply into their homes and still had to use well water for drink and bathing. What I had taken for granted was a luxury only some could afford at that time. So, I guess the doctors in Salford Royal Hospital had reasons to question me that extensively.
It felt strange to be in a ward where all around me were English; foreigners ... or was I the foreigner? Strangely, that was the first time I had ever been hospitalised. When I prepared myself for prayers, I could feel all eyes on me. One of the ladies was kind enough to talk to me, and she was shocked to learn that I could speak English quite decently. She was even more shocked to hear that I had told the doctor that I never had a boyfriend nor slept with anyone at 22. That was how I escaped the VE by the doctor. Thank God the doctor respected my status at that time.
The next day I was taken to the radiology department for my first renal biopsy (later to be repeated in Malaysia). I had been told to fast prior to the procedure. And once again, I am thankful to the doctor/radiologist for taking the time to explain the procedure in detail to me. I was then made to lie down on my front, not after I changed into the hospital gown.
The room was warm enough, but I could feel myself shivering – probably more from fear than the cold. Even though I understood what the radiologist had said, but to imagine the needle piercing my back and right into my kidney was something to contend with.
All embarrassment aside when I felt the doctor gave a shot of the anaesthesia on my back. Boy! Did that hurt....and then it was a numb sensation. Then the doctor told me to breathe in and hold my breath, and I could hear a slight thud when the needle pierced my back into my abdomen. At first I could not feel anything much, but after 3 or 4 tries, I could sense a blunt aching on my back and it was getting more difficult to hold my breath longer.
Procedure completed, I was sent back to my bed, the furthest in the ward, and continued to lie down on my front for the next almost 24 hours. A really uncomfortable experience I must say. Thankfully, I have this life saving mechanism that whenever it becomes inconvenient to use the toilet, I don’t feel like going to the toilet. But, as the anaesthesia wore off, the back pain became quite unbearable. It felt like I was stabbed by a knife, so much so I had to request for a painkiller. It was all I could do to stop myself from crying – from self pity I guess, being subjected to this kind of treatment ... all alone ...so far away from home. Prayers were only offered by “niat”; no ablution, but just by respecting the prayer times. I wonder why, none of my friends came to visit; they could have helped me make the wuduk. Perhaps everyone was busy with the upcoming finals. (see appendix on renal biopsy)
The next day, when I was more mobile, I decided to join the other patients at the ward lounge watching TV and listening to the older ladies chitchat. It was a comforting feeling, to know that I was being accepted by them, and that they all had kind encouraging words to give me even though I was foreign to them. I guess illness brings people together.
And I am reminded of the words of God in Sura Rom:
”And among His Signs is the creation of the heavens and the earth, and the difference of your languages and colours. Verily, in that are indeed signs for men of sound knowledge.” 30:22
I have gone through the whole procedure – the endless blood tests, the urine tests, the CAT Scan, the renal biopsy. Most of the tests were inconclusive, but one thing was for sure – both my kidneys were diseased, and the basic cells – the nephrons were damaged. I had glomerulonephritis. The prognosis was not good.
(c) norhafizah manaf
Spring was fast approaching – and I was engaged! It was just a simple understanding between my then suitor (later husband) and I. We had met at a common friend’s house and made the “taaruf”; something like a getting to know each other, asking questions about each other; even some personal ones. I was not one to lie about my condition; so I explained to him of my impending renal disease. He seemed to be able to accept it at that time. (later I learnt he had no idea what renal disease was!).
After our mutual agreement to be married, he had then called my father from Sheffield to ask his permission to marry me. I don’t really know until today what actually made my father gave his consent through the phone; without even checking him out first. I would like to think he trusted my judgment enough. Or perhaps it was the call I had made earlier.
For three months I had kept my medical condition secret from my family back home. However, when my husband proposed and we agreed we would be married in England itself, I knew I could not hide my illness from my parents any longer. Sadly until today I question the wisdom of my decision.
When I called Abah telling him about my renal condition, and that I was to be admitted into hospital soon, my father sounded cool enough. But I know him – strict and temperamental as he was, my father was a very emotional man where his children are concerned. Once when he visited my sister at the hospital, and the latter was in the hospital gown awaiting surgery, my father cried. When asked why he was crying, since it was just a minor operation, he had replied, he could not bear to see any of his children wearing the hospital clothing, like some social welfare case. So I was pleasantly relieved to hear his calm voice over the phone.
Alas, what I did not know then was that perhaps the shock to hear of my poor health, and being so far away from home was too much for him, for not long after, he suddenly could not walk again up till the day he died, in 1991.
And that is why regardless of my illness, or my upcoming marriage, I had to pass my finals and returned with a degree scroll. When I first went to boarding school (almost like a millennium ago), my father’s words of advice stuck in my mind never to be forgotten. He had said, “I don’t have any riches to pass down to you. The only wealth I have that I pass to you is my name...be proud of it, and make it your personal responsibility to care for the name you carry.”
I never forget that. All those years when I was in school and then at the university. It was a driving force for me, to excel in my studies. That was all I had to show how I appreciated my parents’ sacrifices for me. And I was not going to let my illness stop me from getting my degree.
The finals was in May, so I had to strive these last two months before my exams. My husband and I had decided to get married in April, and that was a month away.
I had to settle everything so that I could concentrate on my studies. It was time I got admitted for my renal biopsy.
(c) norhafizah manaf
My birthday had come and gone peacefully; the only surprise being my diagnosis of pending renal failure by Dr. Tarsh. The CAT scan was performed with inconclusive results. But definitely there was something wrong as my headaches progressively worsened.
It was the end of the year. Christmas was around the corner. Every Brit I would say was in a merry holiday mood. The weather was getting really cold; it had to snow soon. And so, with the joyful “ho ho ho” cheerful feeling all around, my date of admission into the Salford Royal Hospital for a renal biopsy was postponed to the following year, 1984.
And so it was a quiet Christmas for me. I don’t celebrate Christmas. I am not a Christian anyway. But I recall the time when the first Muslim pilgrims who migrated to Ethiopia (Habsyah) to seek asylum from the persecuting disbelievers of Quraish. Someone had forewarned the then Emperor of Ethiopia, Negus who was a Christian, that the Muslims looked down upon the Christians and proclaimed Jesus not as a son of God but as a mortal and a prophet of God. Upon arrival, Negus wanted to know of this view that the Muslims hold of Isa (Jesus) and Maryam (Mary). Jaafar bin Abi Talib the Prophet’s cousin who was one of the pilgrims then recited Surah Maryam (Chapter 19) of the Holy Quran which explains explicitly and clearly of Islam’s point of view on Isa and Maryam’s miraculous birth. His divine guided answer impressed Negus so much that the muslims were allowed freedom to stay.
I remember too in that particular surah, Maryam’s desperate cry as her moment of childbirth drew nigh.
“And the pains of childbirth drove her to the trunk of a date-palm. She said: "Would that I had died before this, and had been forgotten and out of sight!" 19:23
What trials and tribulations the mother of Isa had to go through – the utter humiliation of being accused of having a child out of wedlock, the loneliness she had to bear of having to go through a pregnancy in hiding; all alone... and to suffer the ultimate pain of labour alone at so young an age. But she had endured; and Allah had rewarded her so generously.
I looked into myself. What are my hardships compared to that suffered by the Holy Virgin Maryam? I only had to contend to my physical problems; but the blessed mother of Isa had to face abuse of her dignity, her chastity and the impending birth of a son at such a young age.
Who am I to complain then? I was determined to pull through this. My body may be diseased, but as long as I believe that God is only testing me, my spirits will hold on.
Strangely enough, it was at this time that a friend of mine confided in me that someone was interested in me, and “would I be interested enough in him to consider marriage?”
Oh God! As if I haven’t enough headaches of my own already???
(c)Norhafizah Manaf
With the referral letter from Dr. Tarsh I managed to fix an appointment with the Salford Royal Hospital near Manchester. When the day came, again I went alone. My two best friends, Mas and Siti were already married; and I did not want to impose on them. Habibah had something on and could not accompany me. I have always tried to be as independent as I could from ever since I got into boarding school at thirteen. So I was cool about going alone, I had told Habibah.
In my heart? ”I want my mummy....”
When I reached the hospital, I was directed to the CAT Scan room. The radiologist explained to me explicitly why and how the procedure was to be carried out. Personally I was grateful for his explanation. I think patients should know what is about to be done unto them. The rationality of knowing what is about to happen to us can have both a comforting and calming effect. I was told that I was to be injected with a radioactive dye and as the dye moves through my veins, I would begin to feel a tingling sensation especially to both my lips and “down there” (his words). Even in my nervousness, I had to smile, albeit feebly.
The injection was bearable, as was any other injection, but as the blue dye moved slowly through my body, I remember feeling dragged down; a real heavy sensation bearing down on me. Lying down made breathing even more difficult and I reckoned my anxiety must have been apparent; for the doctor explained that barium is a metal with a relatively high mass. No wonder I was feeling dragged down. And then it came; the tingling sensation to my lips which made it almost impossible to open my mouth to speak – a most queer experience I must admit. The anxiety and the effect of the barium made my breathing more laboured. I had to try to calm myself. And I resorted to the one way I knew how. I began to recite the 'zikr' quietly – invoking the names of Allah and all HIS attributes. The zikr had never failed to calm and soothe my jittery nerves. It works every time.
I was not disappointed. Reciting the zikr throughout the remainder of the procedure made me lose track of time, and before I knew it, it was all over.
Heaving a sigh of relief I thanked the Almighty silently. Little did I know at that time that it was to be a journey of getting close to HIM, calling out HIS hallowed presence, seeking strength and patience through HIM, of having a personal relationship with my Creator.
It is true as the saying goes, “A blessing in disguise”. I was afflicted with ESRD, but I was certainly most blessed to be able to experience HIS love and mercy.
When the results of the CAT Scan came through, it was not so conclusive. I had to be admitted for further tests.
(c)norhafizah manaf
“Fizah, really you shouldn’t. How many have you taken already?” Habibah shook her head in disappointment as she watched me gulp down my twelfth tablet of paracetamol with a glass of cold water.
Habibah was my best friend; having stayed in a boarding school, SMSS together since we were thirteen; and then for yet another five years in the UK. I knew she meant well. But she had no idea of the terrible headaches I have been suffering lately. And the finals were just around the corner. I needed to stay alert and focused; but the headaches were not allowing me to stay up to study. I had to pass the finals. I wanted to go home back to Malaysia!
“Its okay Bibs, I can handle this. I just need the painkillers to perk me up a bit more okay. Don’t worry about me.”
“But how many of those pills have you taken Fizah? That’s what you said when you were taking eight of them. How many today?”
“Twelve,” I whispered.
“What?” I watched as Habibah turned red in the face...she was not pleased!
“I don’t care Fizah, tomorrow you will get yourself to the University clinic and get a check up. And no arguing!”
Although Habibah and I were of the same age, and she was normally a mild natured woman, when she was in that mood, I would do well to leave her alone.
Still I had to present my case.
“It must be the grapes I ate over the weekend Bibs. You know me, I get drunk just from eating grapes ... I must be having a hangover right now,” I tried to joke.
It was a lame one. Habibah was not laughing.
So, it was decided I would be going to the University clinic the next day. On Monday, as it turned out, I had only one lecture. Soon after, I headed straight to the clinic in the university grounds.
It was the second time I had been there; the first being a visit to get my Rubella shot – university ruling. I waited anxiously for my name to be called. I never liked going to see the doctors, or going to the hospital for that matter. Hah! Little did I know that for the next few years, the hospital was to be my home.
When my name was called, I was ushered in by a kindly looking middle aged doctor, Dr. Tarsh. When I explained that I was having recurring terribly bad headaches, I was not surprised when she took my blood pressure.
What surprised both of us was that my blood pressure was soaring sky high! No wonder I was having those killer headaches. I remembered Dr Tarsh looking at me without saying a word for what seemed like eternity. The silence was giving me the shivers.
“Any individual below the age of twenty five should never have this kind of blood pressure reading, and you are just twenty two Miss Manaf. That’s saying there is something terribly wrong somewhere. I have only one suspect,” she finished off gravely. Still, she was not letting me in on what was on her mind.
“I want you to take a urine sample and we will see what it says,” she said, and rang the nurse to give me a urine sample bottle.
The results came back (what she did was urine FEME – a clinical test to check if there is any protein leak in the urine) showed my urine to have a protein count of ++++. Dr Tarsh shook her head.
“Just as I expected. You are having some kind of kidney problems and that is what that’s causing you the high blood pressure and headaches. You will need further tests immediately, so I am going to make a hospital appointment for you.”
Wait a minute! Kidney problems? My head was spinning fast. I had just learnt about kidney and osmoregulation in my physiology class. I had just learnt that when the nephrons of the kidneys are diseased or damaged, there is no repair. It is a degenerative condition. The only treatment was either long life dialysis or a renal transplant.
I remember screaming in my head all the way home. I had decided to walk in the cold wintry noon. I needed the cool air to think and assess my situation.
”I cant be having kidney problems...not now! I am in my final semester, and I need to do well in the most important exam in my life. My parents at home were waiting for me to come home with my success.
My parents! What do I tell them? The doctor had said she strongly suspected that probably both my kidneys were affected but she could not be sure. I had asked her what the options are for me if both my kidneys failed. She had mentioned a renal/kidney transplant. So how do I tell my parents I would require a kidney from either of them or from one of my siblings if I wanted to continue living.
I was not aware I had just been wearing a thin blazer over my ‘baju kurung’ all the way in the cold, slinging my winter coat over my shoulder. Only when I reached my flat about twenty minutes later did the cold sting my whole body. Nobody was home and I rushed straight to the toilet.
I looked at myself in the mirror – the blood slowly returning to my nose and cheeks. At the same time, the realisation was finally hitting home too.
I had kidney problems...pending total breakdown. My future was no longer certain. All my dreams, my hopes, my ambition ... now were on hold.
It was too much for me to take in, to digest. And then I remembered the prayer I should recite every time a calamity befalls me or if I hear of one.
“Innalillahi wa inna ilaihi rajiun”.
(From Allah we come, and unto Him we return).
I recited it slowly.
And thenI threw up.
(c)norhafizah manaf
